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18 year old with 5 years of daily headaches
My 18 year old daughter has had chronic daily headaches for 5 years now. She's been on Topomax up to 100 mg, Gabapentin (Neurontin),Demerol, Percocet, Dilaudid, Naprosyn, Axert, Amerge, Relpax, Frova, Nortriptyline 10 mg, Flexiril 5 mg, Acqtic, Benadryl for sleep, Methadone, Amatriptyline, 10 mg, Hydrocodone, Lyrica, Nadolol 20 mg, Migralief, Hydromorphone 4 mg, Cymbalta 90mg, Ambien 10mg for sleep, Diltiazem 60 mg, Vitamin B, CQ10. (A LOAD of meds!!) Nothing helps. They've done Botox injections, she's had two nerve blocks - occipital and a nasal one with no relief. She's done chiropractic, acupuncture, massage - everything under the sun - all to no relief. We don't understand why the doctors can't figure it out. She's even been referred to a psychiatrist, but she's a stable and "normal" young lady who loves school and WANTS to go! (She's missed a lot of school due to pain.) Her pain never goes away and some days she can barely get out of bed due to it.
Do you have any other suggestions we might try for her? She's a very strong Christian girl and her faith has kept her going thru all of this.
Do you have any other suggestions we might try for her? She's a very strong Christian girl and her faith has kept her going thru all of this.
Shot in the dark but I was wondering how all the girls are doing. I have a 22 year old daughter who woke up 2 years ago with a headache. It has NEVER gone away. Her pain never used to go below a 3. She has been on injections, tons of meds, MRIs, neurologists, hormone doctors, optometrist. Doctors said that she had lyme disease (we live in florida, have had no evidence of a tick, so have no idea how that could have happened) but they don't know that this had anything you do with headache. Her pain lately had increased and doesn't go below a 6 for pain. It is killing me that I can't do anything to help her. Anyone have any updates info on your girls?
***@****
Chris
***@****
Chris
I am a 22 year old female who has suffered from migraines from the age of 7. They have changed over the years to the chronic daily type for the past 6. I have a constant pain on the top of my head that never goes away and will get worse. I also get throbbing sinus pressure that comes and goes. I have been to two different neurologist both have put me on nortriptyline and topomax. Most recently I was told that in order for topomax or nortriptyline to take effect the migraine cycle needed to be broken so I was put on IV treatments. Valporate, Kempra, and Vimpat are all different treatments I was put on for 5 days at a time. Currently I am waiting to get botox but my insurance is denying it. I understand how she feels because I am completely frustrated. I am young and don't want to live in pain forever.
Hi
I have just encountered this forum by accident as I am a student and am doing some research for a piece of work. I'm not sure if this will be any help - but I guess anything is worth mentioning when it comes to headaches.
I had never suffered from headaches of any kind until I was in my mid 20's, (although my mother and sister both had a history of migraines). One day I developed a headache from nowhere, which lasted for 5 months without a break. I used to wake in the early hours of every morning in excruciating pain. Nothing relieved it. It was there every day, for 24hrs a day. I then had a couple of months without pain, followed by over 6 months of another debilitating headache. They continued on and off thereafter for several years, rendering me unable to work for weeks at a time. I saw many General Practice doctors and a neuro specialists. I had an MRI and was thoroughly examined. Eventually I was given a diagnosis of cluster headaches and told I would have to take steroids regularly and also that I might find it helpful to have an oxygen tank at home to deal with attacks.
A member of my family then sent me an article about debilitating back pain and headaches from problems with teeth. Most of the examples given were to do with mal-alignment of bite, ie the top and bottom teeth not meeting properly. I knew I didn't have this problem so at first I dismissed the idea. Eventually however, I decided to pursue this thought with my dentist. He explained it was possible that I was grinding my teeth at night and made a bite guard for me to wear at night. I wore it for a couple of weeks and my headaches disappeared.
I am now 38 years old and occasionally have a flash of a headache as a reminder of those times. However, now all I need do is wear my bite guard at night and the pain is gone.
I am a practicing osteopath in England (where we are not required to be medical doctors to be an osteopath). I have seen several young people with headaches and have found work on aligning the pelvis and balancing leg lengths very effective in helping them.
I realise these sound like very simple solutions and forgive me if it's something you've already tried. I just felt that, having had life-changing relief from it, I should pass on the experience.
Good luck and kind regards
I have just encountered this forum by accident as I am a student and am doing some research for a piece of work. I'm not sure if this will be any help - but I guess anything is worth mentioning when it comes to headaches.
I had never suffered from headaches of any kind until I was in my mid 20's, (although my mother and sister both had a history of migraines). One day I developed a headache from nowhere, which lasted for 5 months without a break. I used to wake in the early hours of every morning in excruciating pain. Nothing relieved it. It was there every day, for 24hrs a day. I then had a couple of months without pain, followed by over 6 months of another debilitating headache. They continued on and off thereafter for several years, rendering me unable to work for weeks at a time. I saw many General Practice doctors and a neuro specialists. I had an MRI and was thoroughly examined. Eventually I was given a diagnosis of cluster headaches and told I would have to take steroids regularly and also that I might find it helpful to have an oxygen tank at home to deal with attacks.
A member of my family then sent me an article about debilitating back pain and headaches from problems with teeth. Most of the examples given were to do with mal-alignment of bite, ie the top and bottom teeth not meeting properly. I knew I didn't have this problem so at first I dismissed the idea. Eventually however, I decided to pursue this thought with my dentist. He explained it was possible that I was grinding my teeth at night and made a bite guard for me to wear at night. I wore it for a couple of weeks and my headaches disappeared.
I am now 38 years old and occasionally have a flash of a headache as a reminder of those times. However, now all I need do is wear my bite guard at night and the pain is gone.
I am a practicing osteopath in England (where we are not required to be medical doctors to be an osteopath). I have seen several young people with headaches and have found work on aligning the pelvis and balancing leg lengths very effective in helping them.
I realise these sound like very simple solutions and forgive me if it's something you've already tried. I just felt that, having had life-changing relief from it, I should pass on the experience.
Good luck and kind regards
My 16 yr old daughter is in the same boat, headache since December '06. Nearly all of the drugs in your post look faminiar, except in varying doses. Currently she's on 400mg topamax (200 twice daily) and 50 Cymbalta. She's home from school yet again today as I write this. She too is a very strong Christian girl, active in the Catholic Church and various area youth groups. It's what keeps her going.
In your post you don't mention what triggered the onset. My daughter came home sick from school around Christmas '06 with a flu-like virus. She, in turn, gave it to me. We both suffered with the fever, body ache and what may have been the worst headache I ever had in my 58 years. I felt like I had an axe in my head for about 10 days, but woke-up one day and it was gone. My daughter's never went away. That episode started it.
A quick recap of her treatment history.... Children's Hospital (Pittsburgh,PA) tried durgs and various IV therapy for 9 months, after which time they gave up and referred her to the Headache Center at the University of Pittsburgh Medical Center (UPMC), which is one of the leading research hospitals in the east. They did more of the same, but did perform one effective treatment that may interest you, as I didn't see anything like it in your post. FYI, I made them aware of the virus/headache issue and they had already made the connection, but could offer no medical reason at that time.
In August of '07 she was hospitalized and administered DHE (simple for a long-named drug). The dosages were in ml or mg ... I can't recall, but I'll say ml. The protocol was to administer the drug in small doses every eight hours until headache free, then for an additional 24 hours after. It began with a .25ml 'test dose' to check for tollerance or adverse reactions. This was followed by 1ml every eight hours until the headache was gone. And gone it was. She was discharged 24hrs later and was headache free for SIX WEEKS ! She was in bright sunlight without sunglasses, swimming, having fun.... I had my daughter back.
Then in late September she came home with a flu bug that some sick kid dragged in to school, triggering yet another headache that wont go away. This time the DHE didn't work, as her headache returned after a few days, but I honestly believe that they didn't keep her long enough. That extra 24hrs may have been the deciding factor the first time. She tried a 'home version' of the same drug, self injecting her thighs 3X a day for 3 days with a 20 gage inch and a half long syringe (not all kids could handle that one), but it proved ineffective, and actually made it worse. The fact that the IV DHE therapy worked, and worked well, does offer some hope, but everyone reacts differently to different drugs, so it's all finding that lucky combination. The neurologists at the Headache Center are firm in their belief that breaking the headache cycle long enough to allow the receptors that interpret different signals as pain to 'RESET' is the best course to take.
Prior to that, Children's administered other coctails (torradol, reglan and benedryl) via IV, and we had that procedure done at the local ER on many occasions, but it was only good for 'beating it down' from a 8 or 9 scale headache to around a 4, making it tollerable until the next flare-up. The DHE did way more than that ... it worked, and was the ONLY thing that worked ....for six weeks, and if she hadn't gotten that second virus, may well have gone a lot longer. It may be worth your while to have your neurologist research this. I don't know where you are located, but I'm sure her doctors can research this therapy, or even contact the staff at UPMC.
One thing that I should mention is that when each dose of DHE was administered her headache intensified .... A LOT .... but quickly subsided after a few minutes, and the residual headache decreased in intensity a little after each dose until totally gone. I strongly believe that the last time she had this done, she was tired of being in the hospital and wanted to go home, lied to the doctor about when she was headache free, and was discharged too soon. That additional 24hrs is key, as it truly breaks the headache cycle.
I hope that this is of some help, or at the very least offers some hope. Everyone reacts differently to teatment, but this truly deserves some investigation and consideration.
Tell your daughter she's not alone. Good Luck.
Gerry
P.S. If you have any success at all with ANY form of therapy, please send me an email at ***@****. I'm on a miserably slow dial-up due to our rural location, and seldom visit these sites just due to lack of time, and would most likely miss any 'good' news.
In your post you don't mention what triggered the onset. My daughter came home sick from school around Christmas '06 with a flu-like virus. She, in turn, gave it to me. We both suffered with the fever, body ache and what may have been the worst headache I ever had in my 58 years. I felt like I had an axe in my head for about 10 days, but woke-up one day and it was gone. My daughter's never went away. That episode started it.
A quick recap of her treatment history.... Children's Hospital (Pittsburgh,PA) tried durgs and various IV therapy for 9 months, after which time they gave up and referred her to the Headache Center at the University of Pittsburgh Medical Center (UPMC), which is one of the leading research hospitals in the east. They did more of the same, but did perform one effective treatment that may interest you, as I didn't see anything like it in your post. FYI, I made them aware of the virus/headache issue and they had already made the connection, but could offer no medical reason at that time.
In August of '07 she was hospitalized and administered DHE (simple for a long-named drug). The dosages were in ml or mg ... I can't recall, but I'll say ml. The protocol was to administer the drug in small doses every eight hours until headache free, then for an additional 24 hours after. It began with a .25ml 'test dose' to check for tollerance or adverse reactions. This was followed by 1ml every eight hours until the headache was gone. And gone it was. She was discharged 24hrs later and was headache free for SIX WEEKS ! She was in bright sunlight without sunglasses, swimming, having fun.... I had my daughter back.
Then in late September she came home with a flu bug that some sick kid dragged in to school, triggering yet another headache that wont go away. This time the DHE didn't work, as her headache returned after a few days, but I honestly believe that they didn't keep her long enough. That extra 24hrs may have been the deciding factor the first time. She tried a 'home version' of the same drug, self injecting her thighs 3X a day for 3 days with a 20 gage inch and a half long syringe (not all kids could handle that one), but it proved ineffective, and actually made it worse. The fact that the IV DHE therapy worked, and worked well, does offer some hope, but everyone reacts differently to different drugs, so it's all finding that lucky combination. The neurologists at the Headache Center are firm in their belief that breaking the headache cycle long enough to allow the receptors that interpret different signals as pain to 'RESET' is the best course to take.
Prior to that, Children's administered other coctails (torradol, reglan and benedryl) via IV, and we had that procedure done at the local ER on many occasions, but it was only good for 'beating it down' from a 8 or 9 scale headache to around a 4, making it tollerable until the next flare-up. The DHE did way more than that ... it worked, and was the ONLY thing that worked ....for six weeks, and if she hadn't gotten that second virus, may well have gone a lot longer. It may be worth your while to have your neurologist research this. I don't know where you are located, but I'm sure her doctors can research this therapy, or even contact the staff at UPMC.
One thing that I should mention is that when each dose of DHE was administered her headache intensified .... A LOT .... but quickly subsided after a few minutes, and the residual headache decreased in intensity a little after each dose until totally gone. I strongly believe that the last time she had this done, she was tired of being in the hospital and wanted to go home, lied to the doctor about when she was headache free, and was discharged too soon. That additional 24hrs is key, as it truly breaks the headache cycle.
I hope that this is of some help, or at the very least offers some hope. Everyone reacts differently to teatment, but this truly deserves some investigation and consideration.
Tell your daughter she's not alone. Good Luck.
Gerry
P.S. If you have any success at all with ANY form of therapy, please send me an email at ***@****. I'm on a miserably slow dial-up due to our rural location, and seldom visit these sites just due to lack of time, and would most likely miss any 'good' news.
MEDICAL PROFESSIONAL
Hi,
I do understand the frustation that comes with this and I am sure the physicians are also frustrated in not seemingly able to get a defined diagnosis for the condition.Headaches may be one of the more complex conditions to diagnose and treat. A complete medical history is usually needed and a complete physical exam including ophthalmologic and neurologic exams are important.Is your daughter still on these medications? Does she take these medications everyday?
If the primary diagnosis was a migraine , there is a chance that migraines may transform into chronic daily headaches due to medication overuse. There lies an area of uncertainty on how this happens.But some studies show that areas associated with pain determination may become overly sensitive for patients susceptible to migraines.I can not tell if this is exacty what is happening to your daughter but this is something you might want to ask her doctors.
Education, support , and behavioural therapy may help. Follow up and communication with her physicians are also important.
I do understand the frustation that comes with this and I am sure the physicians are also frustrated in not seemingly able to get a defined diagnosis for the condition.Headaches may be one of the more complex conditions to diagnose and treat. A complete medical history is usually needed and a complete physical exam including ophthalmologic and neurologic exams are important.Is your daughter still on these medications? Does she take these medications everyday?
If the primary diagnosis was a migraine , there is a chance that migraines may transform into chronic daily headaches due to medication overuse. There lies an area of uncertainty on how this happens.But some studies show that areas associated with pain determination may become overly sensitive for patients susceptible to migraines.I can not tell if this is exacty what is happening to your daughter but this is something you might want to ask her doctors.
Education, support , and behavioural therapy may help. Follow up and communication with her physicians are also important.
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